We are on day 4 post-surgery and things finally took a turn for the better.  To be honest, if I'd have known how much pain Cody would be in, and how grueling this would be for him, I would not have done the surgery.  With a child as fragile as him, I would have chosen not to put him through so much trauma and stress.  We are lucky that the 7.5 minute seizure didn't become an unstoppable seizure.  It was the seizures that freaked me out most during this recovery - having 20 seizures in 2 hours in the hospital and then a 7+ minute one the same day - made me really nervous that I'd just put him through too much and his body couldn't handle it.

What I've learned through this is that for Cody, these experiences are almost unbearably stressful.  He understands so little - and you can't explain anything to him.  He's kind of like an animal whose been injured or is caught in a trap.  You want to approach them to help them, but they try to bite you out of fear and/or pain.  After having the wound cleaned just one time on Friday - he would let no one near him until today.  Even if you were wanting to give him food or a drink and he was starving or thirsty - he kicked, clawed, and screamed you away.  And if you dared touch him, he start clawing at his own face and ripping his skin with his fingernails out of frustration.  So even to approach him meant risking him trying to claw himself to death.  He just had no coping skills and revereted to a completely protective, 'don't touch me or come near me' stance.  He has scratches all over his face, throat, lips and bite marks all over his hands from freaking out.  I feel so sorry for him.  Clearly the surgery site was causing him pain - but seeing him react this way was just so intense and impossible.  At the hospital he was on IV fluids, but once we got him home we just couldn't get fluids or food down him.  So all day yesterday I was calling the hospital - fearing dehydration - restraining him so we could get tiny syringes of gator ade down him.  And all the restraining just furthered his stress about being touched.  It has truly been a nightmare.  We've tried different pain meds to control the pain more, nothing seems to help enough.  And the risk with too much medicating is that he sleeps all day and won't take in food or drink either.  It's been so hard.  I've been up with him the last two night giving him syringes full of fluids while holding his arms down. 

But something changed today - maybe because the surgery wound isn't as sensitive.  He sat up on the bed and then stood up (like a newborn deer on wobbly legs) - and then stood and signed 'swing.'  I was thrilled.  At least he wasn't boycotting me and was trying to communicate.  So I put his swing up and nervously picked him up to put him in and he only flinched a little.  He's been asleep in the swing since.

But Don and I agree - we were NOT prepared for the intensity, trauma, and pain he would be in.  Not to scare anyone else off of G-tube surgery - I think we couldn't have known how Cody would react to the pain.  And I think the intensity of this experience lies mainly with the fact that we can't communicate what's happening to him - and he can't use words to tell us how he feels - so he resorts to self-injury or trying to injure us.  It is so frustrating and so sad.  I feel terrible for putting him through this.  And as I told Don, it's not like this surgery even deals with the things that have been the BIG issues we face like seizures, sensory issues, developtmental delay, gastro attacks.  Eating just became a primary issue a few months ago.   

We go in Thursday to learn how to feed him through the tube and attempt the first feeding.  But I am so scared that he won't let anyone near his tummy for weeks.  And he's barely getting enough food/drink to just stay hydrated in the meantime.  Even now I tried to give him some drink and as I approached him he started clawing his face.  Ugh.

I pray that someday we can look back and say it was all worth it based on results. 

On the flip side, the hospital stay had some warm moments.  There was a young couple sharing our room with a little baby who was only 45 days old.  She was born with her intestines outside her body.  Her parents have never had her home yet.  Her side of the room looked like a fairytale - a moblie with butterflies, home made pink blankets, a swing, a bouncer - they clearly wanted to make it a special place for her.  And here these young parents were day in/day out - tending to her every need - getting no sleep - hearing scary statements from doctors and trying to make sense of it all.  We all became friends in our 2 day stay and I have to say that witnessing their love for their baby - and seeing them navigate through the tough waters of doctors, advice, prognosis, surgeries, and more - God really showed me how poignantly He is revealed in the lives of special needs families.  Truly, I don't think I've ever seen a human more heroic than when they are faced with a very sick child.  It's when we're at our best.  In a world that touts 'self' and 'pleasure seeking' at all costs - in a world that tells us perfection and physical beauty is all that matters - here are parents mending broken dreams of the baby they thought would be perfect.  They're thrust into the unknown.  And yet it is a beautiful thing to see these parents discard any thought for themselves.  A mom and dad who don't care if they eat or sleep - but are just there for their child all day and all night endlessly.  That's what I saw in our shared room - and that's what I see every time I connect with the parent of a sick child. 

In God's economy, I'm sure it a beautiful thing to see - people who manage to get beyond their selfish natures and pour themselves out for another.  But when it's you doing the pouring out - it stinks.  :)   Yet I can see God's purposes and redemptive hand in all of it.  He sees the bigger picture.  And having a sick child provides the opportunity to be our best self. 

Course I'd rather be my stinky, selfish old self and have two healthy kids.  :)

with love,

Shawna

Ahhhhhhhhh.....so good to be home.  It's 9am and everyone is still sleeping but me.  Cody is softly snoring on a queen size bed mattress that we pulled into our living room and made up for him.  Casey was up til midnight last night (we didn't get home from the hospital til 10:30pm).  We let him stay up to spend time with him - he had gone 2 days without really seeing much of us and was confused by Cody's crying and pain when we got home.

I slept on the couch next to Cody and he didn't move and inch all night.  I gave him his pain med every 5 hours - and other than a teaspoon full of applesauce with his med - he was totally conked out.

And so we begin the healing process.  He can't use the tube for a week - we go in Thursday to learn how.  Til then we lay low and let that wound site become less tender. 

All ofr now - he's starting to stir.

with love,

shawna

We're FINALLY home at 10:30pm Sat. night.  I will write more tomorrow, but while Cody's resting I wanted to report that he's home safe and sound.  He threw up quite a volume of blood today which worried everyone.  Then he topped it off with a 7.5 minute seizure at the hospital.  And earlier today he had 20 seizure in two hours.

That to say, this it taking a giant toll and has lowered his seizure threshold a great deal.  By the end of the day, he had eaten a cup of applesauce and a few sips of juice and was keeping oral pain meds down, so we convinced them to let us take Cody home.  He wasn't quite as stable as they would have liked, but as I told them, we have the best chance of seizure control at home and that is the biggest threat.  He is in lots of pain - much more than I anticipated.  He literally screams if you touch him or try to move him.  The actual wound site is not bad at all - just a little tube poking out with gauze around it.  Cleaning it is impossible - he shreiks, rolls, kicks, flails, and bit Don so hard on the arm that we feared he had seriously removed a chunk of skin.  So I'm nervous about getting him through the next few days.  The pain is so bad that he seems not able to sleep.  We've tried morphine and codeine - doesn't seem to help a ton. 

We're exhausted - but so glad he's home.  He is such a trooper. 

So please send up some big time prayer for pain management, seizure control, and no more vomiting blood.

There is some really good news - he hasn't even tried to touch the wound site.  We feared he'd be trying to yank the tube out immediately but he doesn't even seem to understand where the pain is coming from.  Whew.

All for now,

Shawna

Cody is throwing up blood - it's 7am.  He had a rough night - the morphine wears off and he gets veyr fussy right before the next dose.  There's also an infant sharing the room who cried all night.  Please keep our  little one in prayer.  I'm not sure if it's a big deal to be throwing up blood - but I can't imagine it's a good thing.  keep you posted, thanks.

Shawna